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Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)


Abstract: The statewide organization for parents of children with visual impairments announces information about their parent conference and gives membership information.
Keywords: Family wisdom, parent organization, visually impaired, parent training

TEXAS FOCUS:

The time for Texas Focus 2010 is has come and the Texas Association for Parents of Children with Visual Impairments is sponsoring a preconference specifically for adult family members on June 9, 2010. The agenda is full of networking opportunities and informative breakout sessions. Bill Daugherty, TSBVI Superintendent is providing update on the campus renovation and current programs offered. The concurrent break-out sessions include both parent and professional presenters: Millie Smith discussing strategies for developing cognitive, communication, and motor skills in young children; Mary Ann Siller showing the necessary tools and resources that help schools assess, set goals, teach, and evaluate your child; Michele Chauvin helping families get started on their child’s portfolio; and Tammy and her daughter, Taylor sharing their experiences on their journey to high school graduation.

This year the National Industries for the Blind (NIB) is partnering with NAPVI and TAPVI to hold a “town hall meeting.” Texas is one of 3 sites chosen to begin a new initiative that will involve families with their area employment resources. Parents are invited to give feedback on the future employment needs of their children.

Learning from Near to Far promises to be an outstanding conference where families will learn about your statewide parent organization and enjoy meeting other families. If you aren’t there this year, look for other opportunities to gather together with families like yours at other events.

Look for future opportunities on the TSBVI web-site and click on “News and Upcoming Events” or the “STaewide Calendar..

for help to attend a parent training opportunity, ask your local school district, your Regional Educational Service Center, and your Specialist with DARS/DBS for funding assistance. If you need travel assistance from TSBVI Outreach please inquire about availability.

NETWORKING ON THE WEB:

TAPVI is on Facebook! It’s a great way to get to know families across Texas. If you want to be part of the TAPVI Facebook community send an email to .

TAPVI MEMBERS KNOW:

“There is no more powerful advocate for children than a parent armed with information and options.” – Dr. Rod Paige, U.S. Secretary of Education, 2001-2004

WHO WE ARE:

TAPVI is an affiliate of the National Association for Parents of Children with Visual Impairments (NAPVI) and ascribes to the general purposes and policies of the national association. TAPVI is a non-profit organization of, by and for parents committed to providing support to families of children who have blindness or visual impairments, including those with additional disabilities. We welcome all parents, relatives, educators, and others involved in supporting families of children with blindness or visual impairments.

WHAT WE DO:

TAPVI and NAPVI enable parents to find information and resources for their children with blindness or visual impairments. We provide leadership, support, and training to assist parents in helping children reach their full potential in school and in the community, through workshops and publications. We offer national, regional, local and online networking opportunities to support and to connect families. We advocate for the educational needs and welfare of children, as well as increase public awareness about children with blindness or visual impairments, so they are included in the community. We foster communication and coordination of services among the agencies and organizations involved with people who have blindness or visual impairments.

TAPVI BOARD:

The TAPVI board is made up of officers who are parents of children who have blindness or visual impairments. Please contact us with any questions.
President
Michele Chauvin
Sugar Land, TX
832-248- 703


President elect
Isela Wilson (Habla Español)
Rancho Viejo, TX
956 -778-1142


TAPVI MEMBERSHIP:

There are several categories of membership. NAPVI dues* are $40 per family per year. Members of NAPVI receive the quarterly Awareness newsletter and become members of TAPVI, which receives $15 of the dues. Grandparents can join NAPVI for $20. Professional associate membership is $50, and group or agency membership is $250. Donations or gifts are tax deductible.

* Membership assistance is available for parents/ guardians. Contact us for information.

HOW DO I JOIN TAPVI?

Please print a membership form from the web address below, enclose your membership dues (make checks are payable to NAPVI), and send to the following address:

NAPVI
P.O. Box 317
Watertown, MA 02471

Online NAPVI & TAPVI membership form:

HOW DO I FIND OUT MORE?

NAPVI: www.spedex.com/napvi 1-800-5 2- 2 5

TAPVI: www.spedex.com/napvi/chapters.html#5

TAPVI on facebook:

Join the online VI community, Family Connect: www.familyconnect.org

Join the TX VI Family email list: www.topica.com/lists/txvifamily

TSBVI Outreach Dept: www.tsbvi.edu/Outreach/index.htm> 1-800-872-5273

TAPVI is supported by a grant from the Hilton/ Perkins Program through NAPVI. TAPVI is also receives support through our collaboration with the TSBVI Outreach Department. We acknowledge our gratitude for their support.

Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)


By M. Beth Langley
Reprinted with permission of AFB Press, American Foundation for the Blind, from M. Beth Langley, “Becoming Part of the Community,” sidebar in “Additional Disabilities: Special Considerations for Classroom and Community,” in A Parents’ Guide to Special Education for Children with Visual Impairments, Susan LaVenture, Ed., pp. 239-241. Copyright © 2007 AFB Press.
Abstract: The author describes how giving her son opportunities to fully participate in and contribute to community life changes the perception other have of him.
Key words: Family Wisdom, volunteerism, community involvement, giving,

Store clerks, pharmacists, the lifeguard at the YMCA, the folks at the mailing store, fellow churchgoers, the bank tellers, and even the librarian have all eventually learned how to address my son, how to read his signals, what his preferences and interests include, and how to encourage his active participation. They have accomplished these feats because they have had many opportunities to observe, react, receive feedback, and try again; they have reasonably good memories; and they are astute observers of how I engage with and respond to him. After several very well intentioned efforts, the librarian has learned that my son reads print although he is visually impaired, and acknowledges his preferences for mystery and humor in his selections. Store clerks announce that his change is ready, give him the paper money, wait patiently as he places it in his pocket, and then offer the coins by supporting his hand with theirs as they release the change into it.

The pharmacist calls out when we enter, “Hey, Eric, it’s Ann. Come to pick up your prescriptions?” and she rattles the bag to orient him to which window to approach. Many of these people just have natural talent and have needed no prompting from me!

I have also come to appreciate greatly the power of a credit card. The young clerk at our local consumer electronics store probably had never encountered such a disabled young man. He desperately scanned the area in hopes of recruiting another sales agent to talk to us. When Eric used his wrist communicator (which plays prerecorded voice responses) to share his name and interest in CD players, the clerk immediately grabbed the nearest player and, in compressed speech, relayed to me all its advantages. I offered Eric the headset and suggested he “listen” and try it out. When I asked, “Would you like to try another?” he removed the headset and extended it to the young man. We tried several CD players. When Eric made his selection from two options, the clerk directed us to the CDs while he rang up the sale. Eric selected several, and we returned to pay for his purchases.

The clerk immediately was “awed” by the fact that Eric had selected (by pure coincidence!) the same CD as the demo in the headsets. An immediate bond was established. He turned to me with the total amount owed and asked how I wanted to pay. Eric extended his credit card, and the young clerk was momentarily silenced. When he returned the card to Eric, he also extended the electronic pen for him to sign the display. Since the electronic display would not accommodate his name stamp, I assisted Eric to sign his name.

By the time we left, the clerk extended the package to Eric’s hand, stating, “Here ya go, dude. Enjoy!” As Eric accepted the package and began to walk out, I heard the clerk exclaim, “Awesome!” So little effort, so much gained.

Modeling what one needs to do to elicit communication and social exchange and to facilitate engagement is the key to community acceptance and initiative. Whatever setting we are in, I make sure that Eric is seen as competent by offering him choices (he couldn’t care less whether he eats fish strips or fillets or whether we buy the tan shorts or the black ones). I enlist his assistance with tasks such as paying for goods, putting groceries on the conveyor belt, loading the milk into the cart, or stamping his own name on checks or on the sign-in form at his physical therapist’s office.

In addition to perceiving Eric as competent, the community also needs to see him in the role of helping. Eric “offers” to return a grocery cart for an elderly man, holds the door open for others, is a greeter at our church, retrieves items from the top shelves for a fellow customer, walks the dogs of residents who can no longer do so at his grandmother’s assisted living facility, and recycles newspapers at the neighborhood facility. Yes, he needs someone’s help to do all this, but the bottom line is that he does do it. When he was younger he partially participated in pushing his peers at the playground on the tire swing, showed another child how to fasten his seat belt on a plane, and filled glasses with ice at church picnics.

Yes, I still notice the stares of others who are not as lucky as our community neighbors to have had frequent interactions with him. When the opportunity arises, he and I are happy to share with children who want to or do ask about his disabilities. Before a child can be dragged away by a parent embarrassed that she asked a pointed question about Eric, I inform her, “You were so clever to observe that…” What parent can ignore praise doled out to his or her child? These parents additionally learn something as a result.

And, yes, Eric and I boldly go into the women’s toilet facility when we are without another male. People notice but seem to realize why he is there, and it has never been an issue. One saintly woman in a very long line at the Houston airport kindly offered to stay with Eric while I used the facility. When I graciously thanked her and explained that he also had to go, she replied that she never thought of that!

Since he became a teenager, Eric has adopted a very age-appropriate attitude that is not always appreciated by others. Although he has no real words, his body actions and vocalizations speak clearly. When he has a meltdown in the community because a preferred song from the piped in music is ending or because a routine he anticipated is interrupted, I can no longer verbally reprimand him because it merely escalates the situation. Now, to distract and calm him, I have learned to respond, “I know you really liked ___, that was a great song,” or “You thought we were going to the pool but we need to stop by the cleaners quickly.” His screeches momentarily cease so I can escort us to a less conspicuous place but, nevertheless, we have created an incident.

How others react depends on my attitude and show of confidence. My verbal behavior is intended more to help them understand why he is upset than to provide him with feedback at that moment.

Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)


By Amelia Westerfield
Reprinted with permission from Building Effective Programs (Winter/Spring, 2010), the Oregon Deafblind Project quarterly newsletter. To learn more about the Oregon Deafblind Project, visit them at .
Abstract: A young shares her life experiences and her approach to life with Usher syndrome. Keywords: Family Wisdom, deafblind, Usher Syndrome, transition, active living
Editor’s Note: We appreciate Amelia allowing us to reprint her wonderful article, as her positive approach and inspiring tips for living are beneficial for everyone.


Usher Syndrome is a genetic disorder that is characterized by congenital hearing loss and progressive vision loss caused by retinitis pigmentosa (RP). There are three subtypes of Usher syndrome: I, II, III. Usher syndrome type I patients have profound congenital sensorineural hearing loss, vestibular dysfunction, and progressive retinal degeneration, with impaired night vision and decreased visual fields. Usher type I is typically diagnosed within the first few years of life by early onset retinitis pigmentosa. Usher syndrome type II, the most common form of Usher Syndrome, is characterized by moderate to severe sensorineural hearing loss that is stable in most cases, normal vestibular function, and later onset retinitis pigmentosa during the second decade of life. Usher syndrome type III is the least common type, characterized by moderate sensorineural hearing loss with progression to acquired deafness, progressive and variable vestibular dysfunction, and later onset retinitis pigmentosa.

ONE DEAFBLIND WOMAN'S APPROACH TO LIFE

Three months before the end of my senior year of high school in Oregon, I was diagnosed with Usher syndrome II. On that particular Saturday afternoon, my parents called my brother and me into the living room and broke the news. I do not remember what was said, but I do remember lying in bed that night believing that my life was over and that all of my plans and dreams were unattainable. Little did I know that 11 years later I would be where I am today—living out my dreams in Seattle, creating more plans for the future, and knowing that despite my vision and hearing loss, anything is possible.
As I sit here at my computer and reflect on the impact that Usher syndrome has had, I realize that I am living the life that I always wanted to live. I am surrounded by my loving family and friends; I am married to my best friend; I recently got my graduate degree as a Master in social work and have begun my professional career as a MSW. I am training for my first marathon and am planning a trip to Russia next summer. At the same time, this does not mean that living with Usher syndrome is always a piece of cake. I still have moments when I want to curl up into a ball of self-pity or times when I am overcome by negative thoughts about what the future might bring. Despite these feelings, however, I accept who I am—deafblindness and all. We all have challenges in life that must be faced, and mine just happens to be Usher syndrome. Here are things that I have found helpful in my approach to life with Usher syndrome.

DEAFBLINDNESS IS NOT AN EXCUSE

I have never used my deafblindness as an excuse to stop working toward my goals or as a reason to lower my expectations. After I was diagnosed with Usher syndrome, my parents never once changed their expectations of me. It was never a question whether I was going to attend college, develop friendships, travel the world, start a career, fall in love, and continue to seek out new adventures while doing the things I love to do. It was my parents’ confident, consistent, overarching belief in me that taught me that despite my disability anything is possible. Over time, I have learned that I really don’t know what I’m capable of until I try, and that if I don’t try, I’ll never know. Once I truly began to adopt this philosophy, I found that things always have a way of working out for the best.

ADAPT, ADAPT, ADAPT, AND THEN, CONTINUE TO ADAPT SOME MORE

The hardest thing for me about living with Usher syndrome is that my vision loss is progressive. Although the deterioration has been slow, it seems like as soon as I become comfortable with the way things are, my vision decreases some more, forcing me to start all over again. I feel like I constantly have to adapt and adjust the way I do things. As a result, I have learned the importance of being open to change and developing new strategies to overcome the challenges brought on by my progressive vision and hearing loss. For example, during undergraduate school, I fell in love with running. After several blows to my forehead from lowhanging branches, I started wearing a hat with a visor when I was outside to help protect my head. Ten years later, I am still running and I am now training for my first marathon. In addition to wearing a hat, I now run in the evenings after work, using my husband’s arm as a guide. I am also slowly learning to enjoy running on a treadmill. In spite of the inexorable progression of my vision loss, I know that running will always be an important part of my life. It may just require a few adaptations as time goes on.

TAKE ADVANTAGE OF SERVICES AND PROGRAMS AVAILABLE TO PEOPLE WITH DISABILITIES

Another thing that I have found helpful in my approach to living with Usher syndrome is learning how to swallow my pride and accept help. Growing up with a moderate to severe hearing loss, my parents were constantly advocating for me at school and setting up special support in the classroom, which I found extremely embarrassing at the time. It was a constant fight in my house to get me to attend my IEP (Individualized Education Program) meetings. It was not until after I was diagnosed with Usher syndrome and began experiencing significant vision loss in addition to my hearing loss that I finally realized that to excel in school and life in general, I needed to accept help. After graduating from high school, I headed off to Colorado to attend college just as I originally planned to do pre-Usher diagnosis. At the time, I remember wondering if moving halfway across the country away from my support system was the best idea, but it turned out to be exactly what I needed. Being in a new environment without my parents advocating and arranging support behind the scenes, I quickly realized that no one was going to help me, unless I took the initiative. I did not know what kind of help was available until I asked, so I decided to inform myself. I was amazed to learn about all the different levels of services that are available to students with disabilities. In addition to the services provided through my school, I also received an amazing amount of support from the Oregon Commission for the Blind.

STRIVE FOR INDEPENDENCE

I believe that continuing to strive for independence is extremely important in maintaining my overall sense of wellbeing and self-confidence. As a deafblind individual, I have found that fitting into a society that revolves around being able to hear and see can be challenging. It would be extremely easy to sit back and rely on others to help navigate the world. I am married to a wonderful man who would not think twice about chauffeuring me to and from work and doing all the grocery shopping. I am not saying that I never ask for a ride or let my husband lend a hand; I am saying that for me, it is important to maintain my independence in certain areas of my life. For example, I have strategically picked where I live so that I am within easy walking distance of multiple bus routes, grocery stores, parks to walk our dog, and a gym. Being able to ride the bus to work and go shopping by myself provides me with daily reminders that, despite being deafblind, I am a capable, independent woman.

HOPE

Another thing that I have found helpful in my approach to life with Usher syndrome, is maintaining a sense of hope about what the future in science might bring for individuals with deafblindness. Although Usher syndrome is incurable at this time, hoping for a cure helps me cope. With the help of my father, I stay current with the latest research on deafblindness. Researchers have succeeded in reversing one form of deafblindness in mice, and others have given sight back to blind dogs. Reading about new scientific advancements inspires me to be excited and hopeful about the future. Sure, it still may be relatively far off, but there are scientific advancements being made all the time, especially now since the Obama administration is once again supporting scientific and medical research. I definitely feel better when I think about the possibility that there will be some sort of biological or technological procedure by the time I am 40 or 50 (just a guess) that would at least prevent me from going completely blind, if not restore my vision to the normal (or even better than normal!) standard. Regardless of what happens in the future, it can’t hurt to hope.

ACCEPTANCE

Coming to terms with being born with Usher syndrome has been a long process for me. I realize that having Usher syndrome is something that I cannot change, so I try not to let myself worry about it or feel sorry for myself, because ultimately that will be unproductive and not change anything. Whenever I bump into someone or stumble off of a curb, I try to push away the negative thoughts and keep going because I know I could not have avoided it and that it is not my fault. Now that I have adopted this mindset, I spend less time dwelling on the negative aspects of my disability and more time being thankful for what I have and hopeful for the future. And, as my brother says, hearing and seeing are overrated anyway!

Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)


By Sue Melrose and Ginger Irwin
Published with permission from Hadley School for the Blind
Abstract: Sharing their own experiences, two instructors from Hadley School for the Blind give tips for traveling with a family member who has a visual impairment.
Keywords: family wisdom, travel, visual impairment
Editor’s note: I first heard these women share their travel experiences listening to an archived Hadley eConnect seminar. Then I ran across the transcript posted on the FamilyConnect website. Both sites have valuable information for families. Check out the list at the end of the article for links to these and other travel resources.

A driving trip or resort vacation for the whole fam-ment? Below, instructors Sue Melrose and Ginily can be lots of fun, but how do you maximize ger Irwin, from The Hadley School for the Blind the experience for a child with a visual impair-which offers free distance education courses for family members of a person with a visual impairment, provide their expertise and some ideas to make your family getaway fun for everyone:

SHARE THE PLAN:

Keep the whole family involved in the travel planning process. Children and teenagers who know where they’re going and what to expect are more willing travelers, especially if they have the opportunity to help pick out fun activities.

MAP IT OUT:

Once plans take a definite shape, create a simple, accessible map of the travel plan for your child to trace with his/her finger. If traveling by car, a map consisting of paper and string, pipe cleaners and tape, or string over an existing map will do. This helps children understand the travel plan, track the distance traveled, and learn about maps as a useful tool.

KEEP BUSY EN ROUTE:

If you can’t see out windows, the world becomes very small when you get in a car. Combat con-fined-space fatigue by creating a travel bag with favorite activities like braille playing cards, an audio player, puzzles, and reading materials. “Making braille notes as little surprises along the way can make the trip more fun,” says Ginger Irwin.

STOP AND STRETCH:
Be prepared to make more stops on the trip to get fresh air and take short walking tours of new locations, especially points-of-interest. Go on small gathering missions and collect simple tactile souvenirs provided by Mother Nature, including interesting rocks, pinecones, leaves, and sand. Melrose has a collection of bottles of sand from many road trips throughout the years.

A REPLICA CAN BE JUST AS GOOD:

Trips to the gift shop are essential if you’re at a large tourist destination. Buying miniatures of your location, like the Statue of Liberty, Mount Rushmore, or the Golden Gate Bridge, can help your child understand and tactically navigate your location.

INQUIRE ABOUT SPECIAL TOURS:

If you plan to go to museums, always call ahead and inquire about tours and accommodations for people with visual impairments. It is best to speak with management, as seasonal employees don’t always know about these opportunities. Some museums and tourist attractions offer audio tours or special “behind the scenes” tours that are not advertised. The same rule applies to special activities and day trips off cruise ships and resorts. By calling ahead and explaining her visual impairment to managers of different day trips during a cruise, for example, Melrose was able to swim with dolphins and go zip-lining. “Explaining my abilities and limitations as a blind person helped the tour staff understand that it wasn’t a risk to let me do these activities, they just had to communicate with me. It’s important not to assume you won’t be able to participate in fun vacation activities because you’re visually impaired.”

ABOUT HADLEY:

Founded in 1920, The Hadley School for the Blind’s mission is to promote independent living through lifelong, distance education programs for people who are blind or visually impaired, their families, and blindness service providers. The world’s largest educator of braille, Hadley enrolls more than 10,000 students in all 50 states and 100 countries each year. For more information, visit www.hadley.edu or call 800-323-4238.
Past Seminars@Hadley: www.hadley.edu/2_f_past_seminars.asp
FamilyConnect: www.familyconnect.org/parentsitehome.asp

TRAVEL RESOURCES:

Hadley’s travel links. www.hadley.edu/2_f_travel_resources_list.asp

Access-Able Travel Source. National Park Service. To qualify for a free “Ac<
www.access-able.com/tips/braille.htm>. cess Pass” to national parks for people with disabilities,
you must provide proof of disability using SATH: Society for Accessible Travel & Hospitali-one of the following: a statement from a licensed ty: Succinct article containing helpful information physician, a document issued by a Federal agenabout services for the blind and visually impaired cy such as the Veteran’s Administration, proof of . Social Security Disability Income or Supplemental
Security Income, or a document issued by a Fred’s Head from APH. Contains links for infor-state agency such as a vocational rehabilitation mation, blogs and twitters, and postings from agency . individuals .

Spring/Summer 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Edgenie Bellah and Jean Robinson
Abstract: Parents of children with visual impairments, including some with additional disabilities, share their family travel experiences.
Keywords: family wisdom, blind, visually impaired, travel, vacation
Editor’s note: The following article was compiled from postings to the TX VI Family Network listserv . Family members who reside in Texas are welcome to subscribe to the listserv by sending an email to .

ALISON:

I have been traveling with my girls, Meglyn (17) and Madison (15) for years. Madison is visually impaired, somewhat physically disabled, and is immunosuppressed due to a transplanted kidney and has some special considerations regarding her previous cancer. Each of those makes traveling a little different, and altogether they make it necessary to plan and be flexible at the same time, too.

When Madi was really young, the difficulties that we had to work around had to do with her inability to walk much/far/long, lack of flexibility with change, tantrums, etc. After her illnesses, they have been about keeping her healthy and working up her stamina. Now she is doing much better physically (we still have to really watch out for curbs, steps, uneven ground, etc.), and we are exploring more complicated trips

The first trip we took after Madi got better was a spring break 2004 road trip across Texas. Madi was still quite weak and still had some tubes in her, so I wanted to make sure we had maximum control over our itinerary. We drove all over; from Austin, we headed west and had stops in Midland (petroleum museum), Odessa (crater), Monahans (sand hills), Carlsbad Caverns, Guadalupe mountains, Davis mountains, McDonald Observatory, Fort Davis, Marfa (alien lights!), Del Rio, Goliad, and various other little towns around San Antonio. I didn’t let the kids bring electronics of any sort, and I read to them most of the time about Texas history and geology! Sounds like torture at first, but we had a great time and the girls remember the trip very fondly.

We’ve been working on Madison’s stamina (in walking, standing in line, etc.) and ability to tolerate change and be flexible for years and she has made enormous progress. We used to have to always take her special needs stroller everywhere we went, but she has done so well that we haven’t used it at all in the past 3+ years.
We took a little 5-day cruise out of Galveston over Christmas break a few years ago to test Madi’s sea legs and see how she would do on our one-day visit to Cozumel. It was really great. We worked on alternating feet on the stairs the whole time and she made enormous strides in that (pun intended!). She walked all over Cozumel that one day we were there (and we were very careful about what we got her for lunch). She even bartered some and bought some t-shirts with her own money that she earned every time she alternated feet on the stairs! That was really effective. Meg sang a karaoke song for Madi.

So, in an effort to continue to expand Madi’s repertoire of travel skills, we are going this spring break to Mexico for a week - just the three of us! We are staying in one place and have no specific plans, so we’ll be free to explore at our own pace. Because she is immunosuppressed, my focus will be on keeping her healthy (food and water, and zero suntan/burn) the whole time.

Madi doesn’t really ask for much, and there aren’t a lot of places she says she really wants to see, but she does talk about Alaska (she says she wants to walk on a glacier), the Grand Canyon, England, San Juan Puerto Rico again, Australia, Barbados again, Galapagos, Rome & Sicily, and Ireland.
We will definitely make plans to visit these places over the years. I want to try her out on a tour at some point - traveling across some European country. Those present different types of challenges than we’ve encountered.

Thanks for the opportunity to write about some of my favorite times!

SUZANNA:

When my children were younger we took them skiing. We called ahead and found a ski place that had an instructor experienced in teaching the blind to ski. After a few days of lessons, we would put an orange vest (like construction workers use) on my children that said “Blind Skier” and an orange vest on us that said “Guide” and we would take them down the mountain using verbal cues. They loved it!

We took them on a three city walking tour of Washington DC, New York and Boston. We called our Senator and arranged a behind the scenes tour of the Capital, called the Smithsonian and got a behind the scenes tour of the museum and also arranged a special tour of the White house.

In New York we got a behind the scenes tour of NBC and a museum where they let my kids touch stuff. In Boston there is already a walking tour set up where the tour guide describes everything. We also took them to Disneyworld where we got a special pass so they did not have to wait in line. Also, they got to meet the characters all together at one time so did not have to search for them.

When we are traveling in the car we stop at Cracker Barrel and get books on tape. You can rent them for three dollars for two weeks and return the tapes to any other Cracker Barrel store in the US. This way we always have new books. We used to carry around the Franklin dictionary because they have some fun games on it.

My children are now 23 and 20 and I don’t regret the sacrifices made so that our children could have some of the same experiences as their sighted friends.

MICHELE:

As a family, we have traveled to Galveston Island, Schlitterbahn in New Braunfels, and California.

It took awhile for Lauren to get used to beaches. When she was younger, she did not care for the sand or the salty air, so we did not stay long or overnight. After several visits through the years, now she enjoys sinking her toes in the wet sand, playing in the ocean waves and even riding a boogie board in calmer surf. We skip building sand castles and search for sea shells instead.

A good substitute for the beach is Moody Gardens Palm Beach, a multi-level swimming pool with waterfalls, splash pads, and white sand. It is somewhat cleaner and safer. We stayed at condos on the beach with our extended family, so we used our kitchens for meals. That saved money, time and our sanity. The condos also had a swimming pool, which provided a fun break for everyone from the salt water and the sand. During car rides we listened to music, and we took turns selecting the CDs. Close to home and affordable, Galveston was a nice vacation spot.

Every summer, Lauren spends a lot of time at the swimming pool. When she was younger, she began exploring the steps first, then the sides, then the jets, and finally tip- toeing around the shallow end as she grew. Now that she can stand up and feels more confident in the water, she thoroughly enjoys water play.

Schlitterbahn in New Braunfels is a water park heaven! Lauren especially liked the torrent rivers, wave pools, and children’s body slides. She also rode the big tube chutes with us, although she did not prefer them as much. We spent most of our time in the areas she liked best and avoided the rides with long lines. The park offered plenty of shaded sitting areas to rest or have a picnic lunch. The newer sections seemed more accessible and had more options for younger kids, while the original section was filled more with teens and up. In the evenings, we stayed at an inn within walking distance of the water park. It was private, quiet, restful and wonderful! After a long day at the water park, we appreciated simply relaxing and watching TV or videos.

Last summer we visited California and spent 2 days at Disneyland. On the plane ride, we brought a portable DVD player, so Lauren listened to her favorite videos and music. A life saver! She really liked the Disneyland California Adventure Park. It is smaller and easier to manage mobility wise. They have a 4-D ride called Soarin’ Over California and a 4-D movie - both very cool! Lauren loved the “It’s a Bug’s Life” rides and splash pad. She could have spent all day there. However, she was brave and rode the big, scary rides, too, so we took turns being brave with her. The second day we explored the main park. We rode as many rides as possible since Lauren was not really into the Disney characters. We requested a special pass, which enabled us to go to the front of most lines. That was very useful for the more popular rides with long waits.
Lauren enjoyed the Fantasyland rides and eating foods from around the world. She did not like the log type rides, where we sat in a row and got jostled around. She preferred more predictable rides that moved smoothly, like the tea cups or the Jungle Cruise, as well as character theme rides where she knew the story, such as Snow White or Peter Pan. She even climbed to the top of Tarzan’s Tree House - a true mobility feat! There are shows and lots of music piped throughout both parks. We skipped the crowded parades and loud fireworks because we thought it would be too much sensory overload for her (and us).

I recommend taking breaks at Downtown Disney or at your hotel. We were pretty exhausted by the end of the day. We relaxed in the hotel hot tub and enjoyed dinners at a cafe across the street. Asking the locals where they eat helped us find tasty, quiet restaurants. Lauren still talks about our trip almost a year later. She mostly talks about going to California and staying in a hotel. I think she really likes hotels. Me too.

Primavera/ Verano 2008 Tabula de Contenido
English Version of this article (Versión Inglesa)

Fragmento del sitio web del Instituto para una Mejor Audición (The Better Hearing Institute):

Resumen: el siguiente artículo ofrece información sobre sitio web del Instituto para una Mejor Audición 

Palabras claves: ceguera impedimentos visuales, sordoceguera, pérdida de audición, estigma,


El Instituto para una Mejor Audición (BHI) es una organización sin ánimo de lucro que educa al público sobre el desatendido problema de la pérdida de la audición y lo que puede hacerse sobre esto. El Instituto fundado en 1973, trabaja para borrar el estigma y acabar con la vergüenza que le impide a millones de personas buscar ayuda por la pérdida de la audición; mostrar lo negativo, las consecuencias de una pérdida de audición no tratada para millones de norteamericanos y promover el tratamiento y demostrar que éste es un problema nacional que puede resolverse.

Para lograr estos objetivos, nosotros:

  • Usamos los medios de comunicación, nuestro sitio web y otros foros de comunicación para exponer los hechos sobre la pérdida de la audición y promover la buena audición. Por ejemplo, gracias a BHI, casi 60 celebridades hollywoodenses, personalidades del deporte, líderes empresariales y otros norteamericanos notables han compartido sus historias sobre la pérdida de la audición y cómo lo han resuelto (Ingrese al Círculo de Celebridades en este sitio web). Desde 1973, los anuncios de los servicios públicos de BHI han aparecido en muchas publicaciones impresas importantes, (por ejemplo: Newsweek, Time, Fortune, JAMA) y en todos los grandes canales de televisión.
  • Producimos y distribuimos materiales educativos (Solicite las guías sobre la pérdida de la audición).
  • Hacemos investigaciones confiables sobre la incidencia de la pérdida de la audición, los beneficios del tratamiento, las consecuencias de ignorar esta condición y temas relacionados.
  • Operamos un centro de llamadas para los consumidores que tengan preguntas sobre la pérdida de la audición. (Llame a 1-800-EARWELL.)
  • Tenemos contacto con profesionales de la salud a través de nuestro programa de Educación Médica Continuada para ayudarle a los médicos a reconocer mejor las señales de pérdida de la audición y trabajar con pacientes para encontrar soluciones.

Nosotros creemos que esta nación necesita dejar de tratar la pérdida de la audición como un problema menor. Las investigaciones demuestran que cuando no se trata esta condición, se reduce el poder adquisitivo, se altera la vida familiar y ocasiona una gama amplia de problemas psicológicos. Las buenas noticias son que, actualmente se dispone de soluciones eficaces para la perdida de la audición, para las personas de todas las edades. A medida que las tecnologías digitales y programables han revolucionado el mundo de los dispositivos médicos, hemos visto los contundentes beneficios que proporcionan los audífonos para la perdida de la audición.

Si usted es una persona con pérdida de la audición, está preocupado por un ser amado con pérdida de la audición o es un profesional de la medicina, BHI lo invita a visitar nuestro sitio web, para que aprenda más sobre la pérdida de la audición y su tratamiento:

Primavera/ Verano 2008 Tabula de Contenido
English Version of this article (Versión Inglesa)

Por Kathy Geiger, Especialista en TVI y VI, Región 5 Educational Service Center

Resumen: Este artículo contiene información sobre la Asociación Nacional Braille.

Palabras claves: ceguera impedimentos visuales, braille, Asociación Nacional Braille, certificación NLS


La Asociación Nacional Braille (NBA) es la organización nacional para usuarios de Braille en América del Norte. Originalmente estaba conformada por voluntarios que proporcionaban material en Braille a las personas ciegas. Los cambios en NBA han sido variados y han beneficiado no sólo a aquellos que tienen la certificación de NLS, sino a todos los profesores de los impedidos visuales. Durante años, la NBA ha comprendido que los Servicios de Transcribir y Educador se han vuelto un problema grande, por consiguiente cuenta con un comité adicional para este grupo. Me gusta asistir a las reuniones no solo  para aprender todas las nuevas reglas, sino también para aprender mejores métodos de presentar los materiales a mis estudiantes. Aunque usted no haya podido asistir a la conferencia de NBA en Dallas en abril, le recomendamos que visite el sitio web de NBA: <http://www.nationalbraille.org>, que contiene un sitio especialmente útil, la Sección Pregunte a un Experto, que está dividida por temas y es moderada por expertos en gráficas táctiles, anotación de matemáticas, transcripción asistida por computador, idioma extranjero y mucho más. Ésta es una gran manera de conseguir informaciones muy específicas y actualizadas.


Primavera/ Verano 2008 Tabula de Contenido
English Version of this article (Versión Inglesa)

Press Release de Texas Chargers

Resumen: Texas Chargers está buscando voluntarios para su retiro familiar anual en septiembre

Palabras claves: Organización familiar, voluntarios, retiro, Síndrome CHARGE

 

¿Quiénes somos?

Somos un grupo de familias, amigos, y profesionales de Texas que estamos dedicados a ayudar a los niños y a los  adultos jóvenes que viven con el Síndrome de Charge. La función primaria de nuestra organización es apoyar las necesidades emocionales y educativas de las personas con el Síndrome Charge y las familias y profesionales que trabajan con ellos. Nosotros ayudamos a proporcionar y a acceder a información del estado de Texas específica para estas familias.

¿Qué es?

¡¡Un día de DIVERSIÓN!! Un retiro en campamento en un  fin de semana con actividades, oradores, buena comida y una gran fiesta campesina. Este retiro ofrece un entorno libre de tensión para que las familias se relacionen con otras afectadas emocionalmente con el Síndrome de Charge, para que puedan compartir las alegrías y retos de criar a alguien con necesidades especiales.

¡Cada niño CHARGE necesita un voluntario para que el retiro sea un éxito!

Las familias llevan a sus hogares nueva información específica sobre los niños con discapacidades que viven en Texas, y los niños con Charge se reúnen con otros como ellos. Los niños de todas las edades alternarán en grupos con voluntarios para disfrutar emocionantes actividades en el campamento. Este año tendremos varios grupos incluyendo, mesa redonda para padres, un foro para padres, un grupo de abuelos, programas de charlas para las madres y talleres para los hermanos.

Finalizaremos el día con danzas y smores (postre de dos galletas con chocolate y masmelo) en el baile campesino. Empezamos en el año 2006 con solo 20 familias; el año pasado tuvimos cerca de 130 integrantes de familias y 22 abuelos. Los niños con CHARGE participantes tenían edades comprendidas entre seis meses a veintidós años. Las familias que asisten al Retiro de Texas CHARGERS se unen a la gran familia y todas juntas pueden enfrentar el futuro.

¿Dónde será?

En Texas Lions Camp en la bella Kerrville, TX www.lionscamp.com

¿Cuándo?

El 12 y 13 de septiembre de 2008. Necesitamos voluntarios para la tarde del viernes de 3 p.m. a 9 p.m., sábado de 8 a.m. a 9 p.m., o en cualquier hora intermedia. Hay una reunión informativa obligatoria para los  voluntarios el día viernes a las 3 p.m. o el día sábado a las 7 a.m. Usted puede colaborarnos los dos días como voluntario o, sólo parte de un día, con tal de que pueda participar en la Orientación y nos comunique su disponibilidad.

¿Por qué hacerlo?

Para ayudar a que los niños con Síndrome CHARGE y sus familias tengan un día de apoyo. No hay nada que se compare a ver a un niño sonreír porque ha aprendido una nueva habilidad o ha logrado una meta en una nueva actividad. Su labor consiste en asegurarse de que cada participante del campamento aproveche la experiencia en Texas Lion Camp, al mismo tiempo que esté seguro y disfrute bastante.  La mayoría del personal acompañará a un niño CHARGER y a su familia, asistiéndole como su hermano(a) mayor en la experiencia del campamento. Algunos miembros del personal trabajarán juntos para cuidar a los infantes y niños pequeños, de tal forma que sus familias puedan asistir al aprendizaje especial y a las sesiones de redes de computadoras. Algunos ayudarán en las actividades especiales como la Noche de película y Pizza o en la noche del baile campesino del sábado. Usted no necesita ser un especialista para ser voluntario, pero valoramos la labor de aquellos que trabajan con niños con necesidades especiales o piensan que pueden hacerlo. ¡Usted no tendrá este tipo de experiencia en cualquier otra parte!

Oportunidades

Guardería, asistencia diurna, atención personalizada a los niños CHARGER, intérprete al lenguaje para sordos, intérprete al español, voluntarios para diversas actividades.

Contáctenos

Para servir como voluntario o para obtener mayor información comuníquese con:

Donna Arthur, Coordinadora de Voluntarios

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(469) 713-4394, o

Cathy Springer, Presidente

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(512) 255-3176

¡Los niños con Síndrome de CHARGE siempre nos harán recordar la Bondad en Todo!